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Author
Topic: Positively No Meds Yet (Read 6614 times)

which10466

I have been Positive (confirmed) since 1994, and at that time I had no insurance, so I didn't officially have a clinic to monitor my health until 2002. I had been working until last year since now I have been experiencing chronic debilitating feet pain, occurring only when I am on my feet more than an hour. If I could safely remove both of them and not make a mess myself they would have been off since the Christmas of 2008. I wondered if any one else is out there that has really no complaints of health except the feet and a small problem with what looks like eczema/Syphilitic corpuscles on my palm and sole flesh. I have done a serious regimen for Syphilis and have been using steroid cremes for the palm/sole flesh, but I am wondering if I will get back to using my feet w/o having pain that will encourage my imagination to thinking if cutting off my feet will stop the pain. Anyone else out there with similar problems?

Are you under a doctor's care? What does your doctor say? I am concerned about the "syphilitic corpuscles" on your hands.

If your syphillis is still active at this point, your doctor should order a lumbar puncture to make sure it has not progressed to neurosyphillis. I had a talk with my doctor about this not too long ago, because I was curious about some of the reasoning behind some of the routine tests that are done.

With HIV as a coinfection, my doctor told me it is not uncommon for syphillis to progress very rapidly. If the lumbar puncture shows the presence of syphillis in your spinal/cerebral fluid, you may need to be hospitalized for a few weeks during which you would be administered IV antibiotics.

This is a lot more common than people realize. That is why it is standard of care to have an RPR (syphillis test) done annually.

As for the feet, it is possible it is HIV-induced neuropathy. I have known people who had this happen to them. Since you have been positive for so long, it is possible the virus is causing nerve damage.

Of course, not everything is caused by HIV or its subsidiaries. Have you ever had any issues with diabetes? That also can cause foot issues.

which10466

Thank you both weasel and aztecan, I will go back to my doctor and do another Spinal tap and make sure it isn't syphilis, but I did take the shots of penicillin and one month of oral medication to clear it up the first month that I had the problem, so hopefully there wasn't any neural damage done. If so, then I will have to put up with it and I don't really want to start opioid medicine, especially how it is easy to get hooked on. But thank you everyone! And I hope you all had a Nice Thanksgiving!

I've been poz since '99 without meds. The only thing I've had was a parasite infection last summer that cleared up in a week. My tcells are very low. 11/09 bloodwork indicated that I had 71 tcells. I never felt better. No meds!

You see, when you "feel sick" what you are typically feeling is the effects of your immune system revving up to fight a disease. So when you have next to no immune system you can feel great! I certainly did. Until things fell apart, that is.

In other words, "feeling great" with next to no CD4 cells probably doesn't mean that you are effectively fighting off diseases, but rather that surrendering to them feels really easy.

I've been poz since '99 without meds. The only thing I've had was a parasite infection last summer that cleared up in a week. My tcells are very low. 11/09 bloodwork indicated that I had 71 tcells. I never felt better. No meds!

To quote a well known hiv specialist Dr Gallant we all feel well untill were sick and then we feel ill, i find your attitude hard to believe to be honest.

I've been poz since '99 without meds. The only thing I've had was a parasite infection last summer that cleared up in a week. My tcells are very low. 11/09 bloodwork indicated that I had 71 tcells. I never felt better. No meds!

I've noticed you haven't been responding to anyone else's, er, responses to you. Why don't you do as a couple of the moderators have suggested & start your own thread? I personally don't agree with your views about meds & I tend to trust doctors & science & I sincerely doubt anything you say will change my mind, but I'm still interested in hearing about why you feel the way you do. And honestly, I'm also curious to find out how long you are able to stay in "good" health. I think you're probably going to be in for a rude wake-up call sooner than later, but I suppose I could be wrong. I have been before.

Sorry guys, working 80 hours a week doesn't afford me much time to keep up with the posts regularily. I honestly don't believe that tcell count is a good marker of health. If it were true that my immune system was not fighting anything becuase it doesn't know to fight, I would definetly be DEAD! I hear all the time that I'm feeling well because my immune system is not fighting anything and infections (bacterial, viral, fungal, and yeast) are growing in my body. Since tcells rally the troops to fight, if you have no tcells your body doesn't know to fight. It makes no sense why I'm still alive. A simple cold virus would kill me in a matter of hours. I have many friends on meds and I celebrate with them when they reach UD because that's their goal. As for me, I refuse to take meds until I get some "sign" that my immune system is compromised.

@Miss Philicia: I've never been one for meds. I only take painkillers when I absolutely have to.@Carly: How am I able to stay in "good health"? I'm not a super health nut or anything. I work hard and I play hard. I workout physically and try to eat healthy. My numbers say that I am sick, but my body tells me that I am as healthy as a horse. If I were to get an OI then I would believe that my immune system is not working properly, but so far I rarely get sick. I catch maybe one or two colds a year and the symptoms never last more than 2 days. If I had no immune system, wouldn't the cold turn into pnemonia and kill me?

which10466

Remember everyone each body is different, as well as all the contents, so why doubt the next person? If someone has an experience in their life it is their experience and yours may not be the same as etay's.

That's very true, everyone is entitled to gamble with their health as they see fit. In light of hard medical evidence I'll take the pre-emptive route of medicine to prevent myself from having more hardship than the disease already deals out. Most medical professionals suggest that around 350 CD4 mark you should begin taking medicine to assist your body in fighting the disease.

Remember everyone each body is different, as well as all the contents, so why doubt the next person? If someone has an experience in their life it is their experience and yours may not be the same as etay's.

You are absolutely correct, everyone's body is different. The problem is the end result, without antivirals, is always the same-DEATH!

my cd4 was at 131 with a viral load of 544,000. I never felt better! Then all of a sudden I started having trouble breathing and ended up in the hospital with pneumonia. It kind of jumped on me out of no where....

of course I'll doubt one person's limited experience to many years of medical studies, reviews and reports and hard medical data that refutes that person. For every story similar to Etay's, the people in these forums can show proof of hundreds, if not thousands, of people who died or very nearly died by not following the medical data and believing they were the "special ones" to not suffer from the known effects of HIV. We all wish we could be the special ones to not deal with the effects of HIV or the side-effects of the meds but long-term non-progressors are few and far between, but they have the numbers to prove their "uniqueness". People with high VL and low cd4 counts and not on meds only have the numbers to prove how close they are to death.

you just gotta get used to this sort of scenario because there have been delusional people not taking meds from nearly the time the data proved the meds were saving people's lives. All we can do is re-tell our own stories of surviving near-death illnesses or the stories of our friends, family and love ones who did die because they didn't take the meds known to save lives. Hopefully, in the sad telling of these stories, a few will listen, will believe the medical data, and will start the meds to not only stay alive; but hopefully to start treatment in time to mitigate the bad after effects of having one's immune system so damaged.

These type of threads are becoming like zombies. Once you think one of them is finally dead and forgotten suddenly, somehow, they get a new lease on life.

Edited 'cause I was apparently watching an S&M video while typing this...

« Last Edit: February 05, 2010, 12:01:52 AM by livebythemoon »

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"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Maybe this forum should take a party line. How about - if you have medical supervision, and if you have access to drugs and resources to pay for them, the time to start HAART is when your doctor tells you its time. Thats the farthest you can go without - the day your doc says - hey, its your time! You could always start sooner of course. Why is this so mysterious in 2010.

Logged

“From each, according to his ability; to each, according to his need” 1875 K Marx

of course I'll doubt one person's limited experience to many years of medical studies...

....long-term non-progressors are few and far between, but they have the numbers to prove their "uniqueness"...ROFLMAO

you just gotta get used to this sort of scenario...

leatherman, I have to say your adamance and vehemence on this topic is somewhat disturbing. I was labeled a non-progressor several years ago, perhaps incorrectly. I have had a lifelong adversion to pharmaceuticals (and the companies that produce them) so ignored the advice to begin meds in 1990, and I'm glad I did. My numbers subsequently improved and my health never suffered. I'm quite certain the meds would have been intolerable then.

Fortunately, we are allowed to make treatment decisions for ourselves. I realize that my body and the way it responds to the world is unique, and never give advice based on my own experience. But I'm not shy about telling my story and expressing my feelings.

Maybe this forum should take a party line. How about - if you have medical supervision, and if you have access to drugs and resources to pay for them, the time to start HAART is when your doctor tells you its time. Thats the farthest you can go without - the day your doc says - hey, its your time! You could always start sooner of course. Why is this so mysterious in 2010.

omg

I certainly do NOT have the confidence in a doctor's opinion that you have, and I can say that lack of faith has served me well. Of course, it all depends on the specific doctor and the situation. But, thank god, they still leave decisions up to us.

The black and white of the medicine is that if you don't take them the disease will consume you. If you do take them they will allow your body to go about its business and keep the virus out of the way. The side effects are not so dire as to avoid them for fear of what they will do to you, because what the virus will do is ultimately worse. Starting medicine has dramatically altered the quality of my life for the better in but 4 short months. The side effects are almost non existent and certainly not worth avoiding the medicine altogether for.

leatherman, I have to say your adamance and vehemence on this topic is somewhat disturbing.

I am the only voice left for several dozen people whom I had called friends who are dead because they thought they could somehow survive this disease without treatment. All those foolish people are dead. If I don't speak out for those people, who are dead and can't speak out to warn others of the dangers of going untreated, then their deaths will have all been in vain.

Though I despised AZT and Sustiva, I managed to stay on those meds for nine months each until a better medication was finally available. As much as I've hated those meds, I do have to give them props for me being alive and here today.

Quite frankly, your personal experience of going without meds in 1990 is not applicable anymore two decades later in 2010 with the range of meds and vast knowledge available today. You're comparing apples and oranges. Atripla ain't AZT monotherapy or even Sustiva monotherapy, by a long shot. Much less when we know about how many people who went without meds in 1990 are now dead while the vast amount of "survivors" from the earlier periods of this epidmic are alive only because of those first early meds. What we most defintely know is that untreated HIV leads to AIDS and AIDS leads to Death.

While your situation is quite excellent, you were also quite lucky. There are several members here who have also been as lucky. However, being in such a unique position though, does not mean that your choices were the best recommendations to be applying to anyone else's situation today. Be thankful that you lived; but you cannot expect anyone to recommend following your choices at all when your outcome was not the norm but incredibly rare. Everyone's first option, per scientific medical data, should be to actively treat against HIV.

omgI certainly do NOT have the confidence in a doctor's opinion that you have, and I can say that lack of faith has served me well. Of course, it all depends on the specific doctor and the situation. But, thank god, they still leave decisions up to us.

Of course they leave decisions up to the patient. But if you don't trust your doctor to treat you correctly, find another doctor. Or become one yourself. Geez. Something as complicated and pschologically loaded as HIV is not something to be amateur about. When the ID tells you its time to take HAART - take the damn stuff. Get another opinion if you want but I'm pretty sure you'll get the same science-based response and rationale from any ID. That's their friggin job. Its not like ID are shrugging their shoulders and saying "it's in god's hands," or "there's nothing we can do". And thank god for that!

« Last Edit: February 21, 2010, 02:57:13 PM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Of course they leave decisions up to the patient. But if you don't trust your doctor to treat you correctly, find another doctor. Or become one yourself. Geez. Something as complicated and pschologically loaded as HIV is not something to be amateur about. When the ID tells you its time to take HAART - take the damn stuff. Get another opinion if you want but I'm pretty sure you'll get the same science-based response and rationale from any ID. That's their friggin job. Its not like ID are shrugging their shoulders and saying "it's in god's hands," or "there's nothing we can do". And thank god for that!

Wow. Am I ever in the wrong forum to be honest about myself. Clearly you people have your own personal agendas to push and are not interested in the fact that someone like me exists and might have valid reasons for never having been on pharmaceutical therapy, even if they are "only" psychological.

Starting medicine has dramatically altered the quality of my life for the better in but 4 short months. The side effects are almost non existent and certainly not worth avoiding the medicine altogether for.

Good for you! Seriously. But not everyone is so lucky. There are many people that do suffer from side effects, hence the overwhelming apprehension that surrounds beginning therapy.

does not mean that your choices were the best recommendations to be applying to anyone else's situation today. Be thankful that you lived; but you cannot expect anyone to recommend following your choices at all when your outcome was not the norm but incredibly rare. Everyone's first option, per scientific medical data, should be to actively treat against HIV.

I'm not attempting to make recommendations to anyone. My first goal is simply to communicate who I am and why I've made the choices I made. That's rather difficult in the face of a mob screaming at me how stupid I am for those decisions.

I feel sorry, then, for all the newcomers to these forums, looking for information and understanding, who are also too itimidated to even begin posting here. Perhaps I need a forum just for the few people like myself who are LTS and treatment naïve, where people like you (who advocate immediate treatment) are not allowed to post?

hijacking someone else's thread with your HIV story, which frankly is not the norm at all but a rare occurrence and which should never be misconstrued for the average positive person's experience, and posting in a thread where obviously "denialism" is being propagated was where you went wrong. Start your own thread, so that your unusual story isn't misconstrued by other people, and so YOU can get a discussion about your unique circumstances without interfering in the quite valid scientific information that is being given in this thread.

I feel sorry, then, for all the newcomers to these forums, looking for information and understanding, who are also too itimidated to even begin posting here.

as a newcomer yourself, then you shouldn't be posting your story into some other newcomer's story. Your unique situation does not give the appropriate information to the OP or the other hijackers in this thread.

Griezzel, I agree that it would be best if you started your own thread to discuss your situation. I understand to a point, as I've been poz for nearly thirteen years now and I'm not on meds yet either. I'm not on meds only because my numbers are good, not because I'm wary of the meds. I know that one day I'll need meds too and I will gladly take them when the time comes. They are so much better now than they were even just five years ago.

I would really like to hear more about you. For instance, as you've been poz for as long as you have and you're still healthy - and alive - enough to be posting on the internet, you must be a long-term non-progressor or at least a long-term SLOW progressor like me. And that's great! It also makes me wonder what your numbers have been like over the years. Mine are available for viewing in my profile.

I see you're also coinfected with hep C - I was too but I did the treatment and I'm now considered cured. It's quite possible that it's the hep C making you feel bad, as the presence of hiv will accelerate the damage caused by hep C.

I look forward to hearing more from you, but please, start your own thread.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

yes, I already pointed out that you weren't the only one. We can all chat more when you start up your thread.

Hopefully which10466, you'll come back and tell us more , so your original concerns can be discussed.

It's sad to see that you haven't even been back online since your thread got interrupted/hijacked by the discussion with Etay. It seems everything just went off course into another discussion about the neccesity of meds to stop HIV, even though we never heard anything about your labwork or any numbers. Sorry about all that. We seem to have had a rash of people with denialist-type opinions coming into the site and stirring up trouble lately. We all hope to hear from you again which10466!

Remember everyone each body is different, as well as all the contents, so why doubt the next person? If someone has an experience in their life it is their experience and yours may not be the same as etay's.

damn! let it go dude. For all the time you're wasting posting these little cryptic messages in other people's threads (especially people who aren't even responding anymore which you would have known if you would have read my post or noticed the last date when the OP posted) you could have written your own thread by now. I'm beginning to wonder about your agenda.

I understand that you went without meds for a long time and thought you'd never have to and now you are. But that's an abnormality. that's being a LTslow progressor. Those are few are far between. The appropriate response, which I gave to a newbie was that meds are required to stop HIV from turning into AIDS and then being the cause of your death. Untreated HIV leading to death is a stance taken here at this site; but not treating HIV is more in common with the beliefs at HIV-denialst sites around the web. Trying to suggest not taking drugs (without knowing the OP's numbers etc) and suggesting to not follow doctor's advice (which is what you implied by interjecting your own story here. something you accused others of doing by the way), you sound more like a denialist yourself.

But Which (the OP) has never returned and never posted numbers, so we really don't know any other advice to tell him but the generic "take meds". Based on the OP mentioning that he was diagnosed in the early 90s, no mention of meds, but complaint about possible syp, sounds like he's definitely got an immune system failure in the works and ought to be taking meds at this point in his life.

Dude, I'm not dissing your experience. I'm just saying that your experience is more unique than the norm and doesn't follow the standard medical guidelines and makes lousy advice to handout to someone new to the site. I'm glad to hear that you are finally going to follow those guidelines yourself and start medications. Now please, go start your own thread already, like the nice moderator Ann suggested too, so you can discussion your more unique situation with other LTNP or LTSPs.

which10466

I am here, I have been a little busy, I do have labwork done at my doctor's request, the # were appropriate enough to have him say that I was cleared to go to work and I won't be wasting any time persuing SSI. So things are looking up for some people, and I know it can change, I suggest to those who feel that life on meds is the only way to keep an open mind. Not everyone needs meds, and it seems that the time that I was diagnosed and never took meds to now was luck because had I taken that strong stuff back then to now I may just not be alive today. Remember the meds weren't so refined back then and usually some people had to change up the meds a lot back then and then nothing worked and then some patients were dying. So I will follow what my doctor says and take them when the time calls for it, but until then....

it seems that the time that I was diagnosed and never took meds to now was luck because had I taken that strong stuff back then to now I may just not be alive today. Remember the meds weren't so refined back then and usually some people had to change up the meds a lot back then and then nothing worked and then some patients were dying. So I will follow what my doctor says and take them when the time calls for it, but until then....

yeppers you were one of the lucky ones then. However, I took those meds that "weren't so refined" etc. and just started my fifteenth HIV med, so your logic that those meds didn't work just doesn't ring true. Without AZT mono-therapy I would have died in 1993 and not been here today. I and the majority of long term survivors (not counting those few LTNPs ) from the 80s and early 90s that I've meet here and in person are all still alive because of those meds. Say what you want; but the HIV virus caused those other people to die, while those meds actually kept thousands and thousands of people alive.

Glad to hear the doc obviously isn't pressuring you to take meds now, so I'll assume your numbers were good and didn't meet the recommended guidelines.